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03 Aug 05 - 07:43 PM (#1534414) Subject: BS: Tourette Syndrome From: John O'L Tourette Syndrome (aka Tourette's Disorder) is a tic disorder medically defined by two or more physical tics plus a vocal tic, all present through a 12 month period. My 7 year-old son Tom has recently been diagnosed with Tourette's. His particular variation began about a year and a half ago with a sudden movement of his arm, and has changed to a flick of his shoulders and head. For the most part it has been only a small movement and one he could either ignore or incorporate into whatever he was doing at the time. The vocal component only presented itself for the first time in March, and it involves a little high pitched squeal which mostly happens when he's very happy. He has been able to suppress them at school until he's out in the playground where he can disguise them as part of whatever game he's playing, and the kids, if they have noticed, don't react to them. (It's only a small town - pop. 4,000 - odd, but it seems to have more than it's fair share of physical & intellectual abnormalities and the kids are pretty much used to these things.) There are three types of medication available but the side-effects seem to be worse than the affliction so we have not used them yet. Anyway the tics have not been sufficiently severe to warrant using them, except for one day earlier this year when they were so severe he said he was afraid his neck was in danger. That was in the school holidays. Yesterday however he said he couldn't control them at school. They were causing him to do big scribbles on his book, and the kids were asking him why he does them. This was very distressing to him as he prefers to keep quiet about them. Last night he came in from playing in the yard and said they had given him a headache. (He never gets headaches, so this too is very distressing for him.) Today we have kept him home and at 9.00 I'm going to ring the doctor and get a prescription. I'm posting this because I know that in the Mudcat community there is a wealth of knowledge and experience of Shakepearian proportions and I guess I'm hopiing there will be some advice we haven't thought of yet on how best to deal with this. John |
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03 Aug 05 - 07:49 PM (#1534422) Subject: RE: BS: Tourette Syndrome From: freda underhill Hi John I don't know much about Tourette's and this may be no use at all.. but magnesium supplements could be helpful. This is because they are a strong muscle and emotional relaxant - they have no side effects that i'm aware of, being just a mineral supplement, but they have a huge effect. They can help women who have harsh monthly muscular cramps, and they are helpful for people with RSI (repetitive injury muscle pains). They may, if taken at night, help your son's muscle's relax from the tension of the extra muscle twitchings, and also help him sleep. good luck and best wishes freda |
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03 Aug 05 - 08:45 PM (#1534537) Subject: RE: BS: Tourette Syndrome From: mack/misophist Good luck to all of you. It looks like it can be a hard thing to live with. |
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04 Aug 05 - 12:33 AM (#1534583) Subject: RE: BS: Tourette Syndrome From: dianavan John, I have worked with kids that have tourette's and I totally understand your concern. I, too, would be wary of medication (thats a personal opinion) but if it eases his discomfort it should be considered; or at least search for a herbal remedy. Since it is neuro-muscular, I'm not sure if herbs will help but you might find something that will reduce his anxiety. Anxiety seems to make it worse. The reason I am wary of medication is that when medicated, the motivation for learning to cope with toureetes may be limited. Seems to me to be a choice of learning to live with it or "trying to medicate it away." He will have to learn to live with this. There are plenty of people who do and remember to keep it in perspective. At least its not MS or cerebral palsy or ... There are severe cases of tourettes and maybe thats when medication is necessary. I think if you pay attention now, you may be able to help him overcome the associated social anxiety. It sounds like he is already learning some coping strategies. It might be a good idea to ask the teacher for some help in socializing the others in his class. It might take the form of a group discussion (with you son's permission) to explain that it is a medical problem that he is trying to control. Kids that age are usually kind and helpful. Seek out therapists who can help him devise coping skills. A speech and language pathologists might be able to help. Occupational therapists are also a good source. Good luck to you and your family, John. It will be an ongoing challenge but he will learn to live with it. If it makes you feel any better, I know a very good mechanic who has tourettes and unless you know him very well, you probably wouldn't notice his facial and shoulder tic. It doesn't seem to have made a difference in his life. |
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04 Aug 05 - 01:30 AM (#1534614) Subject: RE: BS: Tourette Syndrome From: Mark Cohen Oliver Sacks has an essay called "Witty Ticcy Ray" in which he describes a man with Tourette whose tics were controlled with medication. But he felt that the medication took away a vital part of his personality, and he decided to stop taking the meds and live with the tics. Misinformation abounds concerning this condition. For example, "everybody knows" that all people with Tourette syndrome have an uncontrollable urge to say dirty words. Well, only a small percentage of people with Tourette have coprolalia as a part of their disorder. Vocal tics are usually nonverbal sounds. It's also not true that medication for ADHD, such as Ritalin, causes Tourette syndrome. TS is a genetically determined disorder that is not caused by any external factor, though the onset and severity of symptoms can be affected by factors such as anxiety. The relationship of ADHD, Tourette disorder, simple motor tics, and stimulant medication is complex. In SOME children, stimulant medication appears to trigger tics, which may or may not resolve when the medication is discontinued. But it does NOT trigger Tourette Syndrome. Also, many school-aged children who do not have ADHD develop simple motor tics, which last about 6-12 months and then go away on their own. Some studies even show a beneficial effect of stimulant medication on tic frequency in children with tic disorders. Most medical experts do not recommend medication for simple tics. For Tourette, it's very true that the available medications can have significant side effects, and many patients and their families prefer to live with the tics. Obsessive-compulsive symptoms commonly occur in TS, and these may respond to medication if they are disabling. There are some newer medications for tics in Tourette that may have fewer side effects, but I don't know the specifics offhand. The best recommendation is to find an experienced and kind-hearted pediatric neurologist who has experience in treating children with TS, gather as much information as you can, and then sit down with your child and the doctor together to weigh the ins and outs and come up with a decision. One of the best sources of information is the Tourette Syndrome Association. Also, since it sounds like you're on the eastern side of the pond, you might check out this site: Tourette Syndrome Support in the UK, which I found on the excellent website on Tourette found at Family Village. I'd pay more attention to their recommendations, and the thoughts of the experienced neurologist, than to those of well-meaning friends and Mudcatters...including me! Which is not to discount all the well-meaning friends and Mudcatters, who sympathize and truly want to help. I wish you well. Feel free to send me a personal message if you have specific questions. (I'm a developmental pediatrician as well as a mediocre guitarist and songwriter.) Aloha, Mark |
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04 Aug 05 - 01:43 AM (#1534617) Subject: RE: BS: Tourette Syndrome From: John O'L Well we've been to see the doctor, called in at the chemist, and now we have the drugs. Clonidine. It seems to be the least of a bad bunch. Tomorrow I will get magnesium as well. Thanks freda, I ran it past the doctor and he agreed it might help and if it doesn't, it won't hurt. dianavan, I appreciate what you say about the medication removing the necessity for him to learn to live with it, and also therapy. We would not consider medication if we didn't think there was a real possibility of him hurting himself, or as long as the tics weren't interfering too much with his social/school life. It seems that both those criteria are satisfied at the moment. The trouble is that the drugs have to be started at a low dose and increased slowly, and then when we take him off them they have to be tapered away slowly, so it has to be a reasonably long-term thing. I haven't seen Jill since we left the doctor, she went back to work, but right now I'm thinking we'll try him on the drugs for about 6 months and then get him off them. As you say, he has to learn to cope, and he has been, very admirably, until this latest very severe bout. It's a damned-if-you-do-damned-if-you-don't situation, because they come and go anyway, and they might just go away tomorrow by themselves. We (Jill and I) have had a session with a therapist and we are taking Tom to the next session. |
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04 Aug 05 - 01:55 AM (#1534622) Subject: RE: BS: Tourette Syndrome From: John O'L Thanks Mark, I was composing while you were posting. The medication altering Tom's personality is my greatest fear. We have talked to a pediatric neurologist who we all liked a great deal, with whom we arrived at these decisions we have made. He has also told us he would make room for us in his schedule if we felt we needed to see him again. I will chase up those links you supplied (We are in Australia). Thanks again, John |
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04 Aug 05 - 04:55 AM (#1534663) Subject: RE: BS: Tourette Syndrome From: Georgiansilver John. Clonidine is not a drug that will affect his personality, other than (possibly)altering his blood pressure which can make him feel lethargic and distant. I have looked after several children with Tourettes syndrome over the years and have found a wealth of information at the Library and latterly on the internet. Please take a look at the following sites by copying and pasting them into your browser....you may find them useful. http://www.tourettesyndrome.net.tourette.htm http://www.tsa.org.uk/ Best wishes, Mike. |
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04 Aug 05 - 06:03 AM (#1534687) Subject: RE: BS: Tourette Syndrome From: John O'L Yes, thanks for that Mike, Jill has assured me that Clonidine is not that kind of drug, and I am very relieved, but I'm still not entirely happy with the long-term use of it. We have decided to wean him off it for the Christmas holidays and reassess the situation then. |
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04 Aug 05 - 06:15 AM (#1534692) Subject: RE: BS: Tourette Syndrome From: The Fooles Troupe A word of advice about many drugs and stuff such as mineral supplements - more is not always better! |
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04 Aug 05 - 06:24 AM (#1534699) Subject: RE: BS: Tourette Syndrome From: John O'L Ah yes, moderation in all things. Wish I'd learned that earlier than I did. |
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04 Aug 05 - 06:50 AM (#1534707) Subject: RE: BS: Tourette Syndrome From: Bunnahabhain I'm sure your doctor has already pointed this one out, but make sure the Magnesium supplements are not too strong. Excess Magnesium is not good. I have a freind, who as treatment for mild mercury poisoning, had to take Magnesium. She was taking 4 tablets a day as treatment, and a further 14 to control the side effects. As she is currently writing her pathology thesis, I belive her when she states they're all necessary. |
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04 Aug 05 - 09:00 AM (#1534797) Subject: RE: BS: Tourette Syndrome From: Donuel It is my experience that a minor physical tic as well as the urge to vocalize an Eeep sound will dissipate on their own with self awareness, followed by self control. |
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04 Aug 05 - 10:10 AM (#1534851) Subject: RE: BS: Tourette Syndrome From: bbc Barry Finn would be able to help w/ info. You might send him a PM & see if his wife, Justine, picks it up. As you may know, Barry is recovering from a liver transplant. best to you & your son, bbc |
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04 Aug 05 - 10:15 PM (#1535325) Subject: RE: BS: Tourette Syndrome From: harpgirl Someone very close to me whom I have known since he was born has recently developed Tourette's. (Not my son) May I recommend Tourette Syndrome and Human Behavior by David E. Comings, MD, Hope Press, Duarte Ca. 1990. One of the facts I became aware of upon reading this tome was that Tourette's is a very commmon genetic disorder, much more common than we think. Then I realized that some of the odd behaviors I have seen in clients over the years, which I didn't recognize as tics might very well be. I once recognized it in a psychology grad student who had gone undiagnosed his entire life. He cleared his throat and coughed, grabbed his pants, and straightneed his leg out in a kicking motion over and over. The obvious tics like coprolalia are easily identified. It's the subtle ones and the combinations of tics that are not so readily identified as Tourette's that I find challenging diagnostically. We don't have physicians in this area who recognize these disorders readily. I never learned anything about Asperger's as a student either. A cerebellum disorder, for instance can have affects on development which, when identified allows everyone responsible for a child's growth and development to be more sensitive to individual needs. Recognizing genetic conditions that affect personality development and the challenges these individuals face in growing up and finding a niche has been an important part of my learning in my field. l,hg |
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05 Aug 05 - 02:01 AM (#1535430) Subject: RE: BS: Tourette Syndrome From: open mike The person in Oliver Sacks writings who had Tourette's (mentioned by Mark C. a'bove) was a very acomplished surgeon, if i recall correctly, and was able to maintain control over his symptoms of the syndrome, in order to perform difficult surgeries. In the periods of rest between these intense sessions, he needed to allow his body to sit, sprawl, stretch out and in various ways relax from the effort of keeping it all together in between times. http://www.oliversacks.com/ you can see references to his writings on Gilles de la Tourette Syndrome if you look up on the Subject (alphabetical) page. good luck, and i jsut thought it might be helpful to see a case study about a person who did not let their condition stop them from being successful. |
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05 Aug 05 - 10:33 PM (#1536127) Subject: RE: BS: Tourette Syndrome From: John O'L Harpgirl - It's an interesting point you raise about the frequency of Tourette's and how it goes unidentified. Since finding there is almost certainly a hereditary link I have recognised all Tom's symptoms in myself, albeit to a much lesser intensity. It comes as something of a surprise to find that in a clinical sense I probably have it myself, and it puts it all in a very different perspective, since it changes nothing. I'm still the same as I was when I thought I was normal (grin), and so is Tom. Also my brother and sister, both schoolteachers, have taught several kids over the years with Tourette's. Thank you all for your thoughts, wishes and the effort you have put in on Tom's behalf. I will follow up all the links & recommendations, and report back if anything noteworthy eventuates. |
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05 Aug 05 - 10:51 PM (#1536136) Subject: RE: BS: Tourette Syndrome From: SINSULL PBS did a show on Tourette's featuring a surgeon who was able to control the tics and obscenities during surgery although he pointed out a patient's baldness repeatedly. They also told of young children who were punished for odd behavior for years before a diagnosis was made. Patience, research, and lots of questions. Good luck. SINS |